CDC PUBLIC HEALTH GRAND ROUNDS · 2016-11-15 · Anemia Control Act passed Helped found the Sickle...

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1 1 CDC PUBLIC HEALTH GRAND ROUNDS November 15, 2016 Improving the Lives of People with Sickle Cell Disease Accessible version: https://youtu.be/NPaV0glXhGE

Transcript of CDC PUBLIC HEALTH GRAND ROUNDS · 2016-11-15 · Anemia Control Act passed Helped found the Sickle...

Page 1: CDC PUBLIC HEALTH GRAND ROUNDS · 2016-11-15 · Anemia Control Act passed Helped found the Sickle Cell Disease Association of America . 17 Dramatic Improvement for Children Given

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CDC PUBLIC HEALTH GRAND ROUNDS

November 15, 2016

Improving the Lives of People with Sickle Cell Disease

Accessible version: https://youtu.be/NPaV0glXhGE

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Using Data to Understand Gaps in Care and Outcomes

Mary Hulihan, DrPHHealth Scientist, Epidemiology and Surveillance Branch

Division of Blood Disorders

National Center on Birth Defects and Developmental Disabilities

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Different Types of Hemoglobin Cause Sickle Cell Disease

www.nhlbi.nih.gov/health/health-topics/topics/sca

Sickle hemoglobin (HbS) causes the red blood cells to stick inside narrow blood vessels, thus blocking blood flow and oxygen supply

Normal hemoglobin (HbA) allows the red blood cells to flex and flow through narrow blood vessels without getting stuck

Different types of hemoglobin (i.e., hemoglobin variants) affect how red blood cells (RBC) function ● The type of hemoglobin inherited through our genes determines whether a person

has sickle cell disease and the type of sickle cell disease

r

a

Sickle RBC

Blood flow blocked

rb

a

Normal RBC

Blood flowing

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Types of Hemoglobin and Sickle Cell Disease, Sickle Cell Anemia and Sickle Cell Trait

“Sickle cell disease” has different combinations ofhemoglobin variants● Hemoglobin S/S or “sickle cell anemia”

● Hemoglobin S/b0 thalassemia

● Hemoglobin S/C

● Hemoglobin S/b+ thalassemia

“Sickle cell trait” is when one sickle gene is present● Individuals with trait typically do not have any symptoms

● Two parents with trait may have a child with sickle cell disease

● Genetic counseling, including awareness of trait status, is important

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Sickle Cell Disease (SCD) Throughout The World

Piel FB, Hay SI, Gupta S, et al. PLoS Med. 2013;10(7)

Worldwide about 300,000 annual births● 79% infants born with sickle cell occur in sub-Saharan Africa

Mortality is associated with access to prevention and health care ● In the U.S., over 95% of children with SCD live past the age of 18

● In low-income and middle-income countries, about 90% of childrendie before the age of 5

Access to public health infrastructure, universal screening programs, and specific medical interventions could lower global mortality

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What Are Symptoms and Outcomes of Sickle Cell Disease?

When blood flow is blocked, sudden and severe pain arises● Episodes are called “sickle cell crises” or “pain crises”

Sickle cell crises can be life threatening● In the brain, can cause strokes

● In the lungs, can cause acute chest syndrome

Sickle cell disease can cause chronic organ damage● In the spleen, impairs immune function

● In the bones, can result in avascular necrosis

● In the kidneys, can result in chronic renal failure

Severity and lifelong impact of sickle cell disease is difficult to predict

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Increased Premature Mortality Related to Sickle Cell Disease

Death Rate Among Those With Sickle Cell Disease 2004–2008, (annualized), African Americans, and Total U.S. Population, 2008

De

ath

Rat

e p

er

1,0

00

Pe

rso

ns

Age at Death, in Years

Paulukonis ST, Eckman JR, Snyder AB, et al. Public Health Rep. 2016 Mar-Apr;131(2):367-75

0

10

20

30

40

50

60

70

80

5–14 15–24 25–34 35–44 45–54 55–64 65–74 ≥75

Sickle cell disease African American Total U.S. Population

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Understanding Who Has Sickle Cell Disease (SCD) Is Important To Improving Outcomes

Hassell, KL. Am J Prev Med. 2010 Apr;38(4 Suppl):S512-21

Sickle cell disease can be life-threatening even at young ages

Newborn screening for SCD in all 50 states● 1,500–2,000 babies are

identified each year

Approximately 100,000 Americans are affected● No national registries to

understand how to improve outcomes

Estimated Number of Individuals per State

Distribution of Individuals with SCD in United States, 2008

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Understanding Sickle Cell Disease Through Surveillance

Registry and Surveillance System for Hemoglobinopathies (RuSH), 2010–2012

Rush

scd

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Research, Epidemiology and Surveillance Continued through PHRESH

RuSH: Registry and Surveillance System for Hemoglobinopathies

Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH) project was launched as next step● Designed to evaluate and validate RuSH methods

● Conducted from 2012–2014

Disseminate findings from RuSH● Families, healthcare providers, policymakers

Sites included California, Georgia and Mississippi

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Moving Forward: Sickle Cell Data Collection (SCDC) Program

www.cdc.gov/ncbddd/hemoglobinopathies/scdc.html

Collect, synthesize and disseminate multi-source, population-based, longitudinal data for people with sickle cell disease (SCD) 1. Establish a health profile of the SCD population

2. Track changes in SCD outcomes over time

3. Ensure credible, scientifically sound information to inform standards of care

4. Inform policy and health care practices

Improve quality of life, life expectancy, and health among those living with SCD

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SCDC Data Will Include Up to 10% of the U.S. SCD Population

SCDC: Sickle Cell Data Collection

Newborn

Screening Data

2004–2014

Hospital

Discharge Data

2004–2014

Emergency

Department

Data

2004–2014

INDEX

Case File

Software

Interface

Vital Records

Data

2004–2014

Medicaid

Claims Data

2004–2014

Clinic

Case

Reports

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SCDC Next Steps

Disseminate findings● Peer-reviewed publications, scientific

presentations, social media, policy briefs

Include additional states● Establish training institute to help other

states develop population-based surveillance system for sickle cell disease

Secure additional sustained support and funding

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Thank You to SCDC Partners, Families, and Participants

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The Sickle Cell Community andPediatric Care for SCD

Kim Smith-Whitley, MD

Chief Medical Officer (Immediate Past)

Sickle Cell Disease Association of America, Inc.

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Historical Perspective

Sickle cell disease is an inherited hemoglobinopathy

Characterized by hemolysis, vascular occlusion

Unpredictable clinical complications such as acute pain, life-threatening infection, stroke and acute chest syndrome (i.e., pneumonia-like illness)

In 1971, Sickle Cell Disease Association of America formed

In 1972, the National Sickle Cell Anemia Control Act passed Helped found the Sickle Cell Disease

Association of America

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Dramatic Improvement for Children Given Oral Penicillin Prophylaxis to Prevent Pneumococcal Infection

Gaston MH, Verter JI, Woods G, et al. N Engl J Med. 1986 Jun 19;314(25):1593-9

Cumulative Infection Rates for All Patients in the Prophylactic Penicillin Study

Study recommended

penicillin prophylaxis

start at age 4 months

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Penicillin Prophylaxis BreakthroughLent Urgency to Newborn Screening

Infection prophylaxis meant infants with SCD needed to be identified early

Newborn screening● Universal screening recommended

by NIH in 1987

● State-by-state adoption of screening

● By 2006, all states screening at birth

Specialized vaccine programs● Pneumococcal vaccines developed

Benson JM, Therrell BL Jr. Semin Perinatol. 2010 Apr;34(2):134-44Consensus Development Conference Statement, Sep 29-Oct 1 1986

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8 year-old Female 9 year-old Male 6 year-old Male

RMCA LMCA RMCA

Who Is At Risk for Stroke?

RMCA: Right middle cerebral artery LMCA: Left middle cerebral arteryAdams R, McKie V, Nichols F, et al. N Engl J Med. 1992 Feb 7;326(9):605-10

Transcranial Doppler Ultrasonography (TCD) in 3 Siblings with SCD-SS

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Transfusion Therapy for Primary Stroke Preventionin SCD STOP Trial

Adams RJ, McKie VC, Hsu L, et al. N Engl J Med. 1998 Jul 2;339(1):5-11

Background● Chronic red blood cell transfusions reduce recurrent stroke rate in

children with SCD

● Transcranial Doppler ultrasonography (TCD) detects children at risk for stroke

Hypothesis: Could children who have increased risk of stroke be helped by transfusions before a stroke occurs?

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Transfusion Therapy Reduces Risk of Primary and Secondary Stroke in Sickle Cell Disease

Adams RJ, McKie VC, Hsu L, et al. N Engl J Med. 1998 Jul 2;339(1):5-11

92% reduction in stroke risk, (P < 0.001)

Chronic transfusion therapy greatly reduces the risk of first stroke in children with SCD-SS who have repeatedly abnormal transcranial Doppler ultrasonography results

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Painful crises occurred later in patients receiving hydroxyurea than in those receiving placebo, and the effect was evident in less than six months

Hydroxyurea Therapy Proven

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Hydroxyurea Works for SCD-SS

Thornburg CD, Files BA, Luo Z, et al. Blood. 2012 Nov 22;120(22):4304-10Hydroxyurea is not FDA approved for use in children

Adverse Event

Hydroxyurea Placebo

EventsPt. Years=100

SubjectsN=52

EventsPt. Years=96

SubjectsN=49

Pain Alone 31 17 46 24

Dactylitis 6 4 35 14

Acute Chest 3 3 10 7

Hospitalization 80 31 149 43

Transfusion 11 6 27 14

Splenic Sequestration 3 2 10 7

Sepsis 0 0 3 3

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Hydroxyurea Works for SCD-SS

Thornburg CD, Files BA, Luo Z, et al. Blood. 2012 Nov 22;120(22):4304-10Hydroxyurea is not FDA approved for use in children

Adverse Event

Hydroxyurea Placebo

EventsPt. Years=100

SubjectsN=52

EventsPt. Years=96

SubjectsN=49

Pain Alone 31 17 46 24

Dactylitis 6 4 35 14

Acute Chest 3 3 10 7

Hospitalization 80 31 149 43

Transfusion 11 6 27 14

Splenic Sequestration 3 2 10 7

Sepsis 0 0 3 3

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Bone Marrow Transplantation Cures Sickle Cell Disease

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Transplantation Can Cure Sickle Cell Disease

Walters MC, Patience M, Leisenring W, et al. N Engl J Med. 1996 Aug 8;335(6):369-76

Kaplan–Meier Estimates of Survival and Event-free Survival after Bone Marrow Transplantation in 22 Patients with Sickle Cell Disease

As of 2016, over 1,000

individuals have received

transplants

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Approach to Pediatric Treatment

Prevent complications before they occur● Penicillin prophylaxis

● Transcranial Doppler

Prevent recurrence of complication ● Hydroxyurea therapy

● Chronic transfusion therapy

● Bone marrow transplantation

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Sickle Cell Disease: Milestones

Infection Prevention

1986

NIH Newborn Screening

Conference

1987

Stroke Prevention

and Transfusion

Therapy1998

HydroxyureaTherapy

1995

Bone Marrow Transplantation

1996

Sickle Cell Disease

Treatment Act

2003

Sickle CellPrevention Act

1972

SCDAAestablished

1971

TCD and High Risk

Stroke

1992

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Sickle Cell Disease Association of America: Common Agenda and Goals

Increased access to high-quality health care across the lifespan

Drug development, therapies and programs● Improve quality of life

● Decrease disease-related complications

Research towards a cure accessible for all people with sickle cell disease

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SCDAA’s Get ConnectedSickle Cell Disease Registry Initiative

Establish a network to distribute information related to clinical care, research, health services, health policy, and advocacy● Children, adults, and families living with sickle cell disease and sickle cell trait

● SCDAA member organizations, and other community-based organizations

● Health care providers and other stakeholders

Establish a mechanism to support care coordination

Develop online communities for information sharing and psychosocial support

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Get Connected: Activities and Early Results

Identify, educate, and train community health workers ● 35 community health workers trained

Connect children and adults to services if not connected

Enroll children and adults with sickle cell disease in Get Connected ● 3,152 children and adults enrolled in 15 states

Funding Opportunity Announcement: HRSA-11-031www.scdfc.org/what-is-get-connected.html

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Sickle Cell Disease: Challenges and Opportunities

Advances in pediatrics, but few across the lifespan● Lack of data decreases ability to identify health care and policies to best support

those with sickle cell disease

Get Connected and Sickle Cell Data Collection project will identify, inform, and fill gaps

Limited access to healthcare professionals with expertise in sickle cell disease● Not just for children but for transition and adult care● High mortality rate in young adult group

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SCDAA SCDNBS Program CBOs

HRSADr. Donnell Ivy

Andrea Williams

National Institute for Healthcare QualityDr. Suzette Oyeku

Dr. Scott Berns

American College of Medical Genetics Dr. Amy Brower

National SCDAA HRSA ProjectSonja L Banks

Sonya RossMeghan RinggoldLeroy Hughes, Jr.

Working towards healthier lives for children and adults with sickle cell

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Improving Outcomes for Adults with Sickle Cell Disease

Kathryn Hassell, MDProfessor of Medicine, Division of Hematology

University of Colorado Denver

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Important Aspects of Adult Sickle Cell Disease

Premature death and mortality

Burden of chronic organ damage

Health care access and utilization

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Premature Death in Sickle Cell Disease

Quinn CT, Rogers ZR, McCavit TL, Buchanan GR. Blood. 2010 Apr Steinberg MH, Barton F, Castro O, et al. JAMA. 2003 AprPlatt OS, Brambilla DJ, Rosse WF, et al. N Engl J Med. 1994 Jun Wierenga KJ, Hambleton IR, Lewis NA. Lancet. 2001 MarCharache S, Terrin ML, Moore RD, et al. N Engl J Med. 1995 May

45

55 54

657072 73 75

0

10

20

30

40

50

60

70

80

1992 (CSSCD) 2001 (Jamaica) 2005 (Los Angeles, born after1974)

Ag

e a

t D

eath

HbSS

HbSC

No sicklecell disease

Age at Death of People with Sickle Cell Disease, By Type, Compared to People Without Sickle Cell Disease

2005 (Los Angeles, born after 1974)

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Surveillance Identifies Previously Missed Individuals

NCHS: National Center for Health Statistics MCOD: Multiple causes of deathPaulukonis ST, Eckman JR, Snyder AB, et al. Public Health Rep. 2016 Mar-Apr;131(2):367-75

Number of Deaths of People with Sickle Cell Disease from Three Data Sources, Georgia and California, 2004–2008

0

20

40

60

80

100

120

140

160

0–4 5–14 15–24 25–34 35–44 45–54 55–64 65–74 >= 75Age at Death, in years

Population Based Surveillance

MCOD Mortality Data

NCHS Compressed Mortality Data

Mean age at death:

42.2 years

Nu

mb

er

of

De

ath

s

>

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0

5

10

15

20

25

30

<1 1-4 5-9 10-14 15-19 20-24 25-34 35-44 45-54 55-64 65-74 75-84 85+

1979(n=301)

2006(n=483)

2014(n=504)

Surveillance Can Assess Impact of Childhood Interventions

Update of Hassell, Am J Prev Med, 2010 on May 2016 http://wonder.cdc.gov

Percent of Deaths by Age at Death for Individuals with Sickle Cell Disease

Pe

rce

nt

of

De

ath

s

Age at Death by Age Group

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Limitations of the Sickle Cell Data Collection (SCDC) System

Whole population data can provide important information, but results must be interpreted with caution

SCDC does not distinguish type of sickle cell disease for each person● Type of hemoglobin can affect course of sickle cell disease

Significant differences in premature death related to type of sickle cell disease● Overestimates lifespan in more severe types

● Underestimates lifespan in milder types

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Limitations of the Sickle Cell Data Collection (SCDC) System

Not all interventions are applied to all forms of sickle cell disease● Hydroxyurea is of proven benefit in HbSS

and HbSβothalassemia

● 40% of people have other types of sickle cell disease and thus would not be given this intervention

May miss important gains in care and outcomes made within a given subset

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Adult SCD: Chronic Organ Damage

Manci EA, Culberson DE, Yang YM, et al. Br J Haematol. 2003 Oct;123(2):359-65Powars DR, Chan LS, Hiti A, et al. Medicine (Baltimore). 2005 Nov;84(6):363-76

Autopsy Study (1929–1996) ● Evidence of chronic organ injury in

74% of 306 cases

● Chronic organ damage second most common cause of death after infection, in >18 year-olds

Cohort Study, N=1,056 patients with 40-year follow-up ● 73% with chronic organ damage

Evidence of Injury at Autopsy

Ch

ron

ic In

jury Chronic lung disease 56%

Chronic renal failure/atrophy 38%

Stroke 18%

Seco

nd

ary

Org

an D

amag

e Liver failure/hepatitis 10%

Cardiomegaly 58%

Congestive Heart Failure 10%

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Chronic Organ Damage Likely Now Leading Cause of Death

Adapted from Hamideh D and Alvarez O. Pediatr Blood Cancer. 2013 Sep;60(9):1482-6

CDC multiple causes death certificate data, 1999–2009

Only 20% died during acute crisis

Common premorbid conditions are often seen in sickle cell disease (SCD)● Congestive heart failure

● Hypertension

● Pneumonia/Acute chest syndrome

60%16%

15%

9%

Cardiopulmonary Renal

Infection Stroke

Most Common Causes of Death by System Among People with SCD, 1999–2009

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Population Surveillance Reveals Course of Disease

Blinder MA, Vekeman F, Sasane M, et al. Pediatr Blood Cancer. 2013 May;60(5):828-35

Any complication

Pain

Pulmonary

0 5 10 15 20 25 30 35 40 45 50

Age, in years

Increase in complications occurs at 15–16 years of age

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Population Surveillance Reveals Use of Interventions

Blinder MA, Vekeman F, Sasane M, et al. Pediatr Blood Cancer. 2013 May;60(5):828-35

0 5 10 15 20 25 30 35 40 45 50

Age, in years

Decrease in use of interventions occurs at 15–16 years of age

Transfusion

Hydroxyurea

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Increased Use of the Emergency Department Begins in Adolescence

EDR: Emergency department reliance = total emergency department visits/total ambulatory [outpatient + ED] visitsBlinder MA, Duh MS, Sasane M, et al. J Emerg Med. 2015 Oct;49(4):513-522

0 5 10 15 20 25 30 35 40 45 50Age, in years

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Sickle Cell Data Collection (SCDC): Clarifying the Course of Disease

Longitudinal tracking● Onset and progression of complications

● Use and impact of complication-specific and overall disease-modifying therapy

Limitation: SCDC does not distinguish type of sickle cell disease● Rate and severity of complications varies

between types of sickle cell disease

● Some disease-modifying therapies (e.g., hydroxyurea) are used only for some types of sickle cell disease (HbSS and HbSβothalassemia)

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Adult Healthcare Access and Utilization

Bundy DG, Muschelli J, Clemens GD, et al. Pediatr Blood Cancer. 2012 Nov;59(5):888-94

Oft-stated assumption is that all children with sickle cell disease receive comprehensive sickle cell care from sickle cell providers● Maryland Medicaid data: 38% of children had not seen a hematologist by age 2

Adult health care is often characterized as nonexistent, inaccessible, or rendered by providers without knowledge or interest● Mostly based on anecdote, not data

● Increase in complications, ED utilization, mortality in early adulthood said to be evidence for this, but data suggest change actually occurs in adolescence

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4-RI

Quality Adult Sickle Cell Health Care Exists

3

2

2

3 3

5-Canada

1-India

1-Tobago (Caribbean)

1-Brazil

1-Puerto Rico

18-MA75

25-NJ39

29228

15

29

11

11

2511

153

167

63

12

43

4

6

60

10-CT

11

2

8

35

7

21

4

6

5

21 –MD3 - DE 5 - DC

Find a Hematologist www.scapn.net and www.hematology.org

Adult SCD

Healthcare Providers

By StateNo Providers

25-50 Providers

>50 Providers

1-24 Providers

11

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Insurance Is Not the Same as Access

Few adults with sickle cell disease are truly uninsured (<5%), but:● May not cover necessary services

● Limited or no access to expert providers

● High-deductible plans may preclude use

Intermittent loss of coverage● Loss of employment – lose employer-based plans

● Gain of employment – no longer eligible for Medicaid, Medicare, or disability coverage

hcupnet.ahrq.gov/HCUPnet.jsp, National Inpatient Sample report, run 21 May 2016

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Role of Self-Determination

McLaughlin JF, Ballas SK. Transfusion. 2016 May;56(5):1014-21

Evaluation in adult sickle cell program, 1993–2009● 22 patients with history of overt stroke on chronic transfusion

● Mean age at transition (transfer): 22 years old

● Mortality: 36% (8/22) within 5 years

All who died actively refused transfusion or stopped coming

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Opportunities and Limitations of Sickle Cell Data Collection

Identify sites of care and use during the critical period of adolescence and young adulthood● Observe disease course while still in

pediatric care, without change in provider

However, lack of use may not mean lack of access● Data regarding referrals, arranged transfers

and scheduled appointments that were not kept are not captured

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Important Aspects of the Sickle Cell Data Collection Program

Population-level data regarding● Premature death

● Disease course

● Impact of interventions

● Healthcare utilization

Identify providers and sites of care

Data can be used to develop strategies to prevent and reduce the burden of sickle cell disease and its complications

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A Health Policy Approach to Sickle Cell Disease

Associate Professor of PediatricsBaylor College of Medicine

Director, Center for Child Health Policy and Advocacy Texas Children’s Hospital

Jean L. Raphael, MD, MPH

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Objectives

Describe current guiding principles in health care policy

Identify policy challenges in sickle cell disease

Outline a policy agenda for sickle cell disease

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Triple Aim for Population Health

Berwick DM, Nolan TW, Whittington J. Health Affairs. 2008 May-June;27(3):759-769

1.Reduce costs● Eliminate overuse or misuse of

diagnostic tests or therapies

2.Improve population health● Identify systematic variations in care

or outcomes ● Apply knowledge to develop policies

for improvement

3.Enhance patient experience● Actively survey patient experience● Involve patients and families in system redesign

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Road Map of High-Quality Care Leads to Improved Outcomes

Dougherty D, Conway PH. JAMA. 2008. 299(19):2319-2321

Clinical Effectiveness Knowledge

Clinical Efficacy

Knowledge

Basic Biomedical

Science

Improved health care quality, and value, and population

health

Key T1 Activity:

Test what care works

1. Clinical Efficacy Research

T1

Key T2 Activity:

Test who benefits from promising care

1. Outcomes Research2. Comparative Effectiveness

Research3. Health Services Research

T2

Key T3 Activity:

Test how to deliver high-quality care reliably and in all settings

1. Measurement and accountability of health care quality and cost

2. Implementation of interventions and health care system design

3. Scaling and spread of effective interventions

4. Research in above domains

T3

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Healthy People 2020

www.healthypeople.gov/2020/topics-objectives/topic/blood-disorders-and-blood-safety/objectives

Hemoglobinopathies were previously well represented

Focus on treatment ● Screening for complications, and disease-modifying therapies

Focus on access to medical home, community resources, and educational support

These objectives were retired because existing data systems could not assess them!

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Advances in Care Are Opportunities to Improve Outcomes

TCD: Transcranial Doppler ultrasonography

Advances in care● Hydroxyurea

● TCD screening for stroke risk

● Chronic transfusions

Extended life expectancy● In 1973, life expectancy was 14 years

● In 2008, life expectancy was 42 years

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Challenges Remain to Improve Outcomes

Persistently high resource use● Especially for acute care

High risk of mortality at early adulthood● Transition to adult care

Poorly studied population

Poor funding and organizing relative to other conditions

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Challenges for Further Research in SCD

Lack of data sources with adequate numbers of people with SCD or sufficient clinical detail

Limited evidence base for management guidelines

Limited number of dedicated clinical providers

www.nhlbi.nih.gov/files/docs/guidelines/sc_mngt.pdf

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Agenda for Sickle Cell Disease: Research and Policy

Population health and big data

Comparative effectiveness research of treatments

Technology-based interventions● Outreach through technology that

patients are already using(e.g., health apps)

Development of new funding strategies

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Agenda for Sickle Cell Disease: Healthcare Delivery

ECHO: Extension for Community Healthcare Outcomes, echo.unm.eduArora S, Geppert CM, Kalishman S, et al. Acad Med. 2007 Feb;82(2):154-60

Building medical neighborhoods● Primary care providers and specialists

collaborate to manage patients

Supporting adult providers with expertise (e.g., ECHO Model)

Modifying existing reimbursement models● Reimbursement for care coordination

Addressing social determinants of health

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What Do We Need Now?

Health care policy strategies are needed to fully realize benefits of basic and clinical science advancements for sickle cell disease (SCD)

Strategies must align with current priorities in reforming health care system

Policy solutions in SCD should be patient-centered, provider-centered, and health system-oriented

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Improving the Lives of People with Sickle Cell Disease

Continue progress in advancing care ● Translating research into treatment and practice

Use data to identify gaps in care● Variability in disease course and management

● Availability, use, and access to care

● Transitions from pediatric to adult care, and for adult care

Need more support to meet healthcare needs● Connect people to care

● Understand better which care is best for each individual

● Better systems to provide patient-centered care

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CDC PUBLIC HEALTH GRAND ROUNDS

November 15, 2016

Improving the Lives of People with Sickle Cell Disease